At a glance 25: Commissioning to develop and sustain user-led organisations (ULOs)

Published: May 2010

Key messages

developing ULOs is a key
component in delivering
personalisation outcomes

strong ULOs help commissioners tackle inequality, build social capital, contribute to prevention, and be more responsive to the local community

ULOs in the UK have a long history, and share common values of choice, involvement and human rights

the essential features of a ULO are that it is run and controlled by service users, promotes the social model and independent living, and provides peer support

commissioners can help ULOs by creating a level playing field and making their processes more accessible

commissioners can pump prime ULOs to support their development and can consider limiting tenders to supported businesses

good procurement is not just about price but about meeting social objectives.

Introduction

This At a glance summary looks at how commissioners working in local authorities can commission in a way that develops and strengthens user-led organisations (ULOs). It is a summary of a longer guide SCIE guide 36.

A ULO is an organisation that is run and controlled by people who use support services, including disabled people, mental health service users, people with learning difficulties, older people, and their families and carers (SCIE, 2009).

Commissioning ULOs is important because the Putting People First initiative to transform adult social care highlights the need to work with ULOs in developing and delivering services.

ULOs play a unique role in the local community by providing a point of contact for information and advice. They have expertise in advocacy, accessibility, self-help and peer support and are a ready-made partner to co-produce services. However they have difficulties in attracting long-term finance, especially to cover core running costs, and often experience difficulty in attracting sufficient activists with skills in such areas as business development.

Commissioners can create and sustain ULOs by making their contracting processes more accessible and easier to understand; by developing the tender specification with local service user involvement and by considering limiting tenders to supported businesses.

The value of ULOs

ULOs are uniquely placed to help commissioners fulfil policy requirements, including personalisation and the transformation of adult social care. Their knowledge and skills can also help to make commissioning more effective. This is because ULOs are founded on shared core values which have arisen from the lived experience of service users.

A ULO is an organisation based on clear values of independence, involvement and peer support. Unlike other third sector organisations, service users have the power and control over the organisation. ULOs are unique because their knowledge is based on direct, lived experience.

Shaping Our Lives

ULOs of disabled people, in their current form, started in the early 1980s with the activities of disabled people in Hampshire who wanted to escape from residential care to live in the community. The Hampshire Centre for Independent living (HCIL) was formed to support this group, and others like them, to live in the community. Many more CILs and ULOs have been established since, especially following the passing of direct payment legislation in 1996.

What ULOs do

The Department of Health has produced 21 design criteria to describe what a ULO looks like and the sort of services it provides. The criteria are detailed because of the need to be clear about what a ULO is and what it is not. You can find the design criteria on the Department of Health website, under ‘policy and guidance’.

The criteria cover three broad areas: the value base – (e.g. promoting the social model and independent living), how a ULO is governed and managed – (e.g. a minimum of 75 per cent of the members of the management committee should be service users), and the sort of services ULOs provide, (e.g. advocacy and peer support).

A ULO does not have to fulfil all of the 21 design criteria and, in reality, most do not. The criteria are to provide a picture of what a ULO could do – the gold standard.

Typical activities of a ULO might include:

information and advice

advocacy and peer support

support in using personal budgets and direct payments

assistance with self assessment and support planning

support in employing personal assistants

equality training

campaigning

co-producing policies and services with local statutory agencies.

Diversity

As ULOs are often small and insecure, it has not been easy for them to include all sections of the community. This is because funding has typically been from specific impairment budgets, preventing ULOs from reaching out to other social care user groups. Another reason is that in the early days of direct payments, these were only available to younger people with physical and sensory impairments.

It is important that all sections of the community have the opportunity to have their voice heard and be involved in ULOs. This means that ULOs need to include all social care user groups and all sectors of the community.

To achieve this, ULOs need resources. Organisations representing particular groups should also be resourced and supported to play a part in a central ULO, or network of ULOs.

Carers

Historically, users and carers have felt a need to compete to have their aspirations recognised. Service users and carers are likely to have different agendas on a day-to-day basis, but fundamentally their interests coincide. It makes sense for a ULO to include carers either within the ULO itself, or for the ULO to be working with a carers’ organisation.

Barriers to the Sustainability of ULOs

Limited income – especially to cover core costs.

Business acumen – ULOs are run by people who have been excluded from areas such as employment, which means their opportunities for skill development have been limited.

Exclusion from other parts of the third sector – civil society organisations with a remit for development and training (for example councils for voluntary service) don’t always include ULOs.

Tendering and contracting – much tendering and contracting by statutory agencies favours large organisations with the specialist resources to respond to tenders.

Valuing what ULOs do – the support that ULOs can give to service users is not always recognised or valued.

Commissioning approaches

Commissioning policies can be developed that:

encourage the development of ULOs and promote the use of third sector infrastructure resources to benefit ULOs

work in partnership with ULOs to develop and deliver services

foster a level playing field for ULOs to compete in the tendering process, including giving adequate time and making the process accessible

consider how the contract specification could be drawn up to encourage ULOs

recognise the added value that ULOs bring, including credibility with service users and working to independent living outcomes

offer three to five year funding agreements

use the principles of the local compact to inform commissioning arrangements

take account of article 19 of the EU Procurement Directive 2004/18/EC to reserve contracts for ULOs

Reserving public contracts for supported businesses

a ‘supported business’ is where over 50 per cent of the workforce are disabled people

for contracts under K144, invite tenders from supported businesses only, or offer the chance to match your best price

for larger contracts tick the ‘reserve under article 19’ box in EU advert

treasury guidance suggests there should be at least one contract with a supported business.

Developing a new ULO

Commissioners in Tamworth decided the area needed a ULO. They worked with a ULO in a neighbouring authority to help them establish a local group. Mercian Ability Partnership (MAP) was formed to be the voice of local disabled people. It took time to establish the ULO but now it is providing information, advice and services to support independent living. Sustainability has been built into the organisation through training in securing bids, strong governance structures, secure premises and networking with other organisations to avoid duplication.

Strengthening and networking amongst existing ULOs

Hampshire has a number of very large, well established ULOs that have a long association with the local authority/Northern Ireland health and social care trust. One of the oldest, Southampton Centre for Independent Living (SCIL), worked with Hampshire Centre for Independent Livingl to set up a Personalisation expert panel or PEP. The PEP brings together a wide range of user and carer-led organisations with senior social services managers. It enables these groups to influence the local authority/Northern Ireland health and social care trust agenda and also provides a forum for ULOs to network with one another.

Useful websites

National Centre for Independent Living (NCIL): follow the link to ULO resources. This section of the NCIL website shares information about ULOs. It also records learning that has come from DH funded Action and learning sites.

Capacity Builders: This website offers advice and support to third sector organisations.